About TOURETTE SYNDROME
What is Tourette Syndrome?
Tourette Syndrome is a neurological disorder, primarily characterized by tics. Tics are associated with a group of neurological conditions known as Tic Disorders.
Tics can occur in as many as 1 in 5 school-aged children at some time, but may not persist. TS and other Tic Disorders combined are estimated to occur in more than 1 in 100 school-aged children but up to 50% may be going undiagnosed (U.S. statistics).
The causes of TS and other Tic Disorders are still unknown. These conditions tend to occur in families, and numerous studies have confirmed that genetics are involved. Environmental, developmental, or other factors may also contribute to these disorders. Researchers are continuing to search for the genes and other underlying factors.
Tics are involuntary, repetitive movements and/or vocalizations.
- Simple motor tics may include but are not limited to movements such as eye blinking, grimacing, head bobbing, shoulder shrugging and/or arm jerking. Simple vocal tics may include but are not limited to things such as sniffing, throat clearing, grunting, hooting or even shouting
- Complex motor tics involve multiple muscle groups or combinations of movements and tend to be slower and more purposeful. These may include things such as hopping, twirling and/or jumping.
- Complex vocal tics are words or phrases that may or may not be recognizable but that consistently occur out of context. In 10-15% of cases, the words may be inappropriate (i.e., swear words, ethnic slurs, or other socially unacceptable words or phrases). This type of vocal tic, called coprolalia, is often portrayed or mocked in the media as a common symptom of TS.
Whether they are simple or complex, tics can be troubling to individuals with TS. They can cause embarrassment and discomfort. In some cases, they can cause physical pain, such as headaches, muscle strain, or soreness. Issues such as repetitive strain injuries have also been reported.
The disorder can be stigmatizing especially if the person with TS is in environments that do not support or tolerate anyone who may appear a bit different. Most parents of children with TS worry about the psychological impact of TS and how their child will be viewed by other children, by their teacher, and by society at large. They are concerned about teasing and bullying, about the ability to make friends, succeed at school and get and keep a job.
Peer education and awareness can help with acceptance. See our Support page for how Tourette Canada can help with education and awareness.
Many people describe a premonitory urge that precedes a tic. This premonitory urge is a feeling similar to what you feel when you need to sneeze or when you have an insect bite that itches. With tics, the premonitory urge is described as a build up of pressure, tension or energy that is relieved when the tic is expressed.
The temporary ability to withhold or suppress a tic is somewhat like the feeling of holding in a sneeze or trying not to scratch an insect bite. The ability to suppress tics varies between individuals. Tic suppression can take a lot of energy, making it hard to concentrate on other tasks. The effort required to suppress tics can also be exhausting. Most people who try to suppress their tics report that the tic will eventually be released.
Young children may not be aware of their tics, and even if they are aware they may have no ability to suppress their tics. Asking a child to suppress their tics is generally not a good idea because the effort involved in suppressing the tics involves a high level of concentration and it makes it difficult for the child to pay attention to other tasks such as paying attention in class. In fact many children and teens with TS find that when they are in a supportive environment where they can tic without attention being paid to the tics, there is a decrease in the number of tics they experience.
It used to be thought that suppressing tics caused a rebound effect after the suppression is stopped. This was described as the expression of all the tics that had been suppressed when the person could no longer suppress them. However, more recent studies have disproven this rebound effect. The study resulted showed that the number of tics did not substantially increase following a period of suppression.
Many parents observe that their child or teen will try to suppress their tics at school and then will come home and explode in bouts of tics. This is often accompanied by other emotional behaviours. The studies on the rebound effect of suppressing tics indicates this behaviour is not the result of suppressing tics, and that further study is required to fully understand the behaviour.
TS is a genetic condition, meaning it is passed on from parent to child. This does not mean that if someone has TS their son or daughter will also be born with TS. Studies indicate that a person with TS has between a 5-15% chance of having a child, sibling or parent with the condition. Scientists originally thought that TS was carried in a single gene, but it’s now believed that TS involves multiple genes. Though it appears that there is likely to be a significant genetic factor, some studies indicate prenatal, perinatal, autoimmune, and environmental factors may contribute to or modulate the severity of symptoms. More research is required to fully understand the disorder.
The symptoms of TS usually begin in early childhood around age five, but may occur as early as age one or two, or as late as the age of 17. Typically the first tics to appear are facial tics like eye blinking, nose twitching, or grimacing.
Brain imaging studies suggest that people with TS have neurological differences in their brains, specifically in their cortico-striatal-thalamo-cortical (CSTC) circuitry. What these differences are precisely and whether or not other areas of the brain are also involved continues to be explored by researchers. Currently, the basal ganglia and the frontal lobes of the cerebral cortex are believed to be involved in TS. The frontal lobes plan and execute movements and thoughts, while the basaI ganglia acts as a brake to prevent unwanted movements and sounds. For individuals with TS, something abnormal happens when the frontal cortex “tells” the basal ganglia to stop particular movements. As a result, unwanted movements and sounds, or tics, occur.
“Yes! Tourette Canada offers a range of virtual support groups for people living with TS and those supporting them. In-person support groups are also available in a few communities across Canada. Click here to learn more and register.
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